Following a stroke, Eileen, 90, and her husband Malcolm, 80, coped with almost overwhelming challenges. A referral to our specialist brain injury rehabilitation service, shone a light at the end of the tunnel. Malcolm shares their story.
The impact of stroke
Why did you need stroke support from Shaftesbury Icanho?
Eileen had always been extremely healthy but had a stroke in February 2020, which was devastating. She couldn’t speak for a couple of weeks and spent six weeks in hospital. She was discharged three days before lockdown as the consultant said that she’d be safer at home than in hospital. The original plan was for carers to come to our home four times a day, but 24 hours before her discharge, because of Covid-19, I was told that they couldn’t provide it. When I asked what the options were, they said ‘leave her here or take her home’.
How were you managing stroke care?
We had some limited support from the community team but I was pretty much caring for Eileen alone. Then at Easter 2022, Eileen had a second stroke which put her in hospital again for around three weeks.
When did you get help from Shaftesbury Icanho?
When Eileen was in hospital the first time, they were talking about referring her to Icanho but the referral was delayed and finally got made after she’d been discharged. But she got help at Shaftesbury Icanho for about 12 months, which was fantastic, it really was, and she was discharged. Then came the second stroke. I spoke to Shaftesbury Icanho’s manager, who said I could refer Eileen back, so she had about another six months of therapy.
How were you both coping with all these challenges?
Well, Eileen was always a very strong woman prior to her first stroke, like a woman 20 years younger than her age, physically and emotionally. She was also very active and involved in everything. She loves gardening and set up the garden club in the village. In her professional life, she had a 30-year association with the police as a special constable and retired with the rank of second in command. However, in terms of how things felt emotionally, things felt much worse after the second stroke. She felt very distant.
Did Shaftesbury Icanho help with this?
Yes, it was interesting to talk with the social worker who explained to me about ‘ambivalent loss’. This is a profound sense of loss and sadness that is associated, not with the death of a loved one, but can be a loss of emotional connection when a person is physically still present. I was helpfully given some academic articles to read and because of my background as a solicitor and judge, I was used to reading medical reports and could take this information on board.
What happened in the second round of therapy?
Well, the first stroke hit one side of her but the effect of the second stroke was more spread out, and her speech had become significantly worse. It meant her earlier treatment at Shaftesbury Icanho was all set back and her mobility had decreased, but we managed to largely keep her out of a wheelchair.
What progress did Eileen make at Shaftesbury Icanho?
It’s been down to Shaftesbury Icanho that she’s been able to get to where she is today and return home. This has made a massive difference to her – we’ve got a lovely house and there’s so much of her here, both in the house and garden which she designed and did a lot of the work herself. For me, what’s important is keeping her in her own surroundings, with her own things around her, even the dog! It’s helped her enormously and I’m sure this wouldn’t have been possible without Shaftesbury Icanho.
I felt by the time Eileen left Shaftesbury Icanho, I’d got more of ‘my’ Eileen back – significantly more of the Eileen I knew before her first stroke. Emotionally now she’s much more connected to me than she was during the first three years following her strokes. I feel that Shaftesbury Icanho has given me a much better approach to Eileen’s difficulties.
Have you visited Shaftesbury Icanho’s Neuro Café for carers?
Yes, it’s good – carers can meet together and exchange views, experiences and learn from others how to deal with problems. It’s linked with the West Suffolk hospital speech and language team who recently created what’s called the communication hub for stroke survivors. The speech and language therapist at Shaftesbury Icanho has been wonderful – very, very helpful.
What do you think is special about Shaftesbury Icanho?
I would say a very, very big thing is the way the therapy team works together. It’s a real contrast with other services. Shaftesbury Icanho’s approach benefits the patient and the carer because you’re not having to constantly repeat the same thing to different people.
Do you need help or information about stroke?
You’ll find plenty of resources HERE including our online carers’ café and advice on reducing the risk of stroke.